By Lexie in The Mighty. I just made one of the hardest decisions I’ve ever had to make. Many of you can relate to my story. I’ve seen countless doctors, integrative general practitioners, naturopaths, chiropractors, and specialists over the last few years. When they couldn’t explain my symptoms, they diagnosed me with chronic […]
By Sam in the My Medical Musings Blog. We all have moments in life when we hit a brick wall physically and perhaps mentally. It happens to the healthy and chronically ill alike. I remember in my “healthier” life, I’d get to the end of my working week and I’d be exhausted. […]
By Jamie Janinski in The Mighty. Four years ago, I went to my doctor complaining of excessive tiredness and having so much pain in my hands that I couldn’t squeeze my shampoo bottle while showering. Four years ago, I received a call telling me I needed to see a rheumatologist right away because my […]
By Ally Teixeira in The Mighty. Having a chronic illness isn’t easy. All of us chronically ill warriors may feel alone, but we all have a lot in common! Here are 12 things that happen when you’re chronically ill. You know you have a chronic illness when… 1. Doing your hair feels like some serious […]
From The Brainless Blogger. Okay, so stop telling people it could be worse. Yeah. It could be worse. It can always be worse. But it sure as hell could be better. We are aware it could be worse. We tell ourselves this sometimes to get through. Hell, sometimes worse happens and we are […]
By Amy Saunders in The Mighty. Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill. You can have days when you feel on top of the world […]
By Natasha Lipman. It took me a long time to come to terms with deciding to become a wheelchair user, but when I knew that I was ready it was like a switch flicked in my brain. For the first time in years, I had a ‘real job’, and even the few […]
By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]
By Christina Carrell in The Mighty. I was sitting in one of those canvas painting classes, waving a paintbrush back and forth in a very amateur attempt to recreate Monet’s “Bridge Over a Pond of Water Lillies” (spoiler: I’m not an artist and the end result bore little resemblance to the […]
By Veronica Vivona in The Mighty. Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]
By Alicia Thompson in The Mighty. It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean […]
From The University Of Queensland. New research from QBI may explain why vitamin D is so important to brain plasticity, and how vitamin D deficiency leads to a range of cognitive disorders, including depression and schizophrenia. This paves way for new research that could lead to preventative strategies or better interventions […]
By Christina Baltais in The Mighty. Pacing is about energy conservation, both physical and emotional. When you’re living with a chronic illness, it’s an essential skill for preventing flare-ups or “crashes.” This “energy bubble analogy” can be useful to help you visualize and understand the limits of your energy, and help you explain them […]
By Annie M. In The Mighty. Have you ever noticed how people talk about illness, even mild illnesses like colds? We often say we are fighting them. We battle colds and fight the flu. We call our friends with scary medical conditions “warriors,” and we encourage them in their “battle” against their illness. It’s true […]
By Nora W in The Mighty. There are thousands of chronic illnesses and even more people who have chronic illnesses. It’s hard for most people to believe, but yes, young people have various chronic illnesses too. I cannot tell you how many times I have told somebody I have a chronic illness and the response I […]
By Lisa Alloto in Chronic illness: Realistic Optimism Blog. Depending on the situation or who we are interacting with, we may portray ourselves in different ways. We often strive to be the person we need to be to achieve optimal success in the moment. In some situations, we may find ourselves to […]
By Meridith O’Connor in The Mighty. I’m in a constant state of risk, using my energy towards something with the potential to cost me other life events later. It’s a difficult balance, knowing when to push through and feel sick later, or prevent the latter by taking precautionary care of myself first. Everyone always […]
Having chronic illness or pain can be very frustrating and debilitating. It affects all areas of your life and your physical as well as your emotional well-being. The upside is that it can be manageable with the right approach and mindset. Review the following four strategies so that you can better deal with chronic […]
By Tony Bernhard J.D. in Psychology Today? For many years after I became chronically ill, I was in denial about the need to set limitations in order to keep my symptoms as manageable as possible. I refused to believe that I might not recover my health. I thought: “You get sick; you get better. It’s as […]
By Cherilyn Schutze in The Mighty. Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and working. […]
By Kaisha Holloway in The Mighty. When being “tired” is more than just feeling tired… Don’t you just hate it when people try to get one up on you, by always striving to be worse off than yourself? Don’t you just hate it when people assume that tiredness is the same for […]
By Erin Migdol in The Mighty. Everyone has said “I’m tired” at one point or another. But those deceptively simple words can have so many meanings. Without knowing the extent of the exhaustion someone with chronic illness is feeling when they say they’re tired, people may think your “tiredness” can be cured by a nap or early night, like theirs, not […]
By Cherilyn Schutze in The Mighty. Stuck in the middle of sick and well. That’s how I feel. Chronic illness is never easy, whether you are the person who’s sick, or the caretaker or family member of a person with a protracted illness. Before I became ill, I was very busy multi-tasking, care-taking, mothering, wife-ing, and […]
By Alicia Thompon in The Mighty. It never ceases to frustrate me to realize how pervasive the “Just Do It” culture is. Whenever I discuss my physical limitations with others, I’m often met with the suggestion that I simply need to “push through.” Which leaves me wondering, what does this phrase really mean to […]
By Christen Marie in The Mighty. For those of us dealing with chronic pain or chronic illness such as fibromyalgia, autoimmune disorders, or any host of other physical or mental health issues, there is often this one overriding issue that can wreak havoc on our lives and yet be very difficult to explain to the average person. Chronic fatigue. Chronic […]
By Veronique Mead in Chronic Illness Trauma Studies. This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. It draws from a 2016 study showing statistically significant objective metabolic changes in ME/CFS and how it is a very real physiological state that is not psychological. […]
By Kendall Kuzma in The Mighty. For someone in reasonable health, it can be hard to understand what a loved one is going through if they are struggling with some kind of ongoing health issue. It’s especially tough for everyone if the illness is one which is unseen, as in, no obvious signs of the […]
By Steve Topple in The Canary. A response from the General Medical Council (GMC) to hundreds of complaints has effectively abandoned 250,000 disabled people. It also demonstrates the GMC’s contempt for the patients it’s supposed to protect. Moreover, in dismissing patient’s concerns, it’s whitewashed what one MP believes could be the “biggest medical scandal of the 21st century”. […]
By Jamison Hill in Jamison Writes. On August 10th Netflix released Afflicted, a seven-episode series in which I appear with six other chronically ill patients. Though I had high hopes for the series, and some parts were accurate, it has ultimately caused damage to the chronic illness community, portraying many of the participants as […]
By Paige Wyant in The Mighty. “Afflicted,” a new Netflix docuseries that premiered on August 10, follows seven people who live with chronic illnesses. I originally thought “Afflicted” was going to shed light on less-known illnesses and elevate the stories and voices of those who struggle with them, but the docuseries did the opposite. Instead […]
By Toni Bernhard J.D. in Psychology Today. The chronically ill carry the extra burden of frequently being misunderstood. I hope the day will come when chronic illness (which includes chronic pain) is recognized as a normal—and inevitable—part of the human life cycle. I also hope the day will come when people understand that chronic illness can […]
By Deema H in The Mighty. I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make […]
By Deema H in The Mighty. I haven’t quite decided what I think is worse: living with a chronic illness or living with an invisible chronic illness. I’ve come to find people don’t realize it’s offensive, not a compliment, to say, “But you don’t look sick!” Let me tell you something: Looking healthy doesn’t make […]
By Toni Bernhard J.D.in Psychology Today. When I began to write for Psychology Today over seven years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s seven years later. A lot has happened in my life, but there’s been one constant: chronic illness, including chronic pain. Since 10 + […]
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Wed 19 June 2019 - at 2 pm - The York ME Community Coffee Club at The Longboat, Blossom St, York.
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Mon 1 July 2019 at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!
The site is full of great information that I feel will benefit many within The York ME Community and beyond.
To go to Access Your Life, click on the link below:
Would you like to help your local community ?
By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.
There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:
The social element of this site is via a Facebook Group called The York ME Community.
This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.
Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
Carol Monaghan SNP spoke in Westminster Hall about the need for support and funds for ME Research. Many other MP's spoke passionately on the subject as it affects their constituents UK wide. Click on the link below to watch the full debate.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
Anil's interview gives a great insight to the man and his ME mission !
Link to Anil van der Zee's Interview
Having read the above interview, I'd recommend a visit to David's Blog below:
After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.
19 May 2017.
“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.
Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."
Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.
Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.
Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,
Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.
One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
Welcome to Broken Puppet Theatre Company.
We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.
Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.
If you're given the time and space to talk things through, you can find a way through your problems.
Samaritans help you to explore your options so you can make decisions that are right for you.
Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.
If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:
FEATURED ARTICLE
By
Sally Duffin
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)
The York Mobility Scooter Club has been set up as a Facebook Group with the idea of being somewhere for anyone in the York area to talk about all things mobility scooters. From those first steps of being so wary of taking that first step of admitting that you need help, to the best scooter for individual needs. All reviews are welcomed !
It will also be where we can talk about accessibility issues in York for scooters, and if this develops into a strong theme, I may open a separate group on that subject.
My aim is also ideally in time to meet up for some sort of wheeled rambles, and so suggestions of sensible routes would be welcomed.
I don't aim to set many rules, just that we all support each other and lend a help when we can. Please feel free to invite others who are aiming to get a scooter, or have one, for whatever reason, and let's see where this little adventure takes us.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.
To learn more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, click on the link below:
The York Inset Scooter Club is based in York (UK) and has a membership of around 250.
They are a thriving, active club and look to support local charities when they can. They have an annual Mods and Rockers charity ride out, and for 2019 supported The York ME Community.
They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, set off by the Mayor of York and the York Normandy Veterans.
All money raised will be used to raise the profile of ME in York through posters being produced and put up in local business premises, clubs, schools, GP Surgeries and venues.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
This is a call out to all York Businesses, Clubs and Venues to put it in your diaries for next season and support your local ME Community.
To join in for next season and help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
To go to Euan's Website, click on the link below:
Our Coffee Club meets twice a month for a cuppa and a natter.
Dates and times will always be shown in our diary at the top left of this site.
The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.
Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.
Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !
By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund. THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !
Written Question to the Department of Health and Social Care on 22 May 2018 by Carol Monaghan SNP, answered by Caroline Dinenage Minister of State (Department of Health and Social Care)
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
A TRUE STORY BY JESSICA TAYLOR-BEARMAN
Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.
This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug' that enables her to fulfil her dream of one day becoming an author.
It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
An album of original songs and poetry composed and performed by people with M.E. from all over the world, was released to mark and support ME Awareness Day, 12 May 2018.
It was hoped that by releasing this album, it will help those with ME to know that they are not alone, and for others to understand the nature of this illness and give what support they can.
Please consider downloading the album, or even a couple of tracks to help raise awareness of ME, and much needed funds for research into this illness that affects so many, but is understood by so few who may be in positions to help. Proceeds to ME Research and Education. All further information and questions, please direct via the website below: The album can be downloaded now from:
PLEASE SPREAD THE WORD !
I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council followed through on their promise by lighting up the city walls and Clifford's Tower in blue over ME Awareness Week.
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.
We had a brilliant day at York Explore Library raising ME Awareness. Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.
If you'd like to hear more about ME, get in touch.
Time For Unrest: Why Patients With ME Are Demanding Justice.
If you want the full story on ME and will read just one article about it this year, please make it this one,
Are you on Twitter? Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour
Mike Harley is a very special guy who's running a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more.
To go to the Government's Disability Benefits Advice Guide, click on the link below: